Monday, February 9, 2009

A Day with Clay

The following was e-mailed to me for posting by our friend Annette. (warning: you may want to get a box of tissues. Especially for the second half.)

A Day With Clay

This is a different type of post. Some are curious about the extent of Clay's care and what it involves. So regardless it is difficult to share some of this, I do in the event it helps educate why it is so crucial that families find solutions to help cope with the tremendous responsibilities. A day with Clay will involve: diapering including and evening bowel regimen, (Clay is large and not capable of standing or sitting so toileting is not a workable option) Gastrostomy feeding...he has a feeding button that stays in his lower left abdomen that resembles a plug on a blow up beach ball. To this we attach a length of tubing and a large syringe which the liquid nutrition is poured into. This is done four or so times daily. He requires bed baths daily and his daddy will shower him in a special shower chair a couple of times a week. His teeth are a big issue because he does not eat so he does not get the abrasive natural cleaning of food against his tooth enamel as he chews. He has a lot of sinus drainage and a tremendous gag reflex. His teeth are misshaped and almost always coated by very hard and thick yellow plaque. It is the only thing that detracts from his incredible good looks and great huge smile. Occasionally we have to go into Richland Hospital as outpatient to have his teeth examined and cleaned in a Dental Operating Room. This is never fun but does become necessary with time. He has to be dressed. He has a queen waterbed in his room which is totally enclosed for his safety...Clay moves around all the time with movement he has little control over, thus the need for enclosure. We have a sling patient lift which is operable from the ceiling from over his bed through his doorway and down the short hallway to the recliner he sits in at home. He straddles the recliner sideways and puts his head on the right arm rest with his legs hanging off the left side. When he is in his recliner he is on his lap top computer communicating and having fun. He accesses it with a switch that is placed by his face and the computer screen scans and he clicks the switch with his face/head to select as we would use a mouse on a screen to move across areas. When he tires of the recliner he will normally go back to his bed or perhaps we are going out and we will put him into his power wheelchair. The photo of Clay (which I-Tiptoe Mama-did not receive) does not show his chest straps that are normally in place to keep his shoulders back and his upper body stable. His arms are both strapped down on his arm plates. He has a lap belt and his feet are strapped. In addition he has a knee block that keeps his knees in proper position thereby keeping his trunk in proper and stable position in the chair seat. He has to be in his wheelchair to be transported at all times. We have a large van adapted with a lowered floor, a high top and a wheelchair lift to get him into and out of the van. Sometimes he likes to eat small portions of foods that do not require a lot of chewing. He often likes to drink iced tea and Coke and even sometimes he will ask for coffee and he is the only one in this household that drinks it! Most nights he is awake for large portions at a time. Sometimes he is just 'chatting' and laughing and dreaming while awake...Other times that we find difficult are when he is having muscle spasms and/or is physically sick, most often with sinus related things that make the gag response super sensitive and often occur continually during the night. Clay handles all these things better than you could imagine. He handles these things much better than his family that takes care of him. His mental -intellectual state is normal for his instructional time and life experience. He verbalizes some things, but not nearly able to verbalize as we wish. He relies on his computer much of the time to really express himself to others. We have learned a lot of what he is saying or trying to say verbally as well as his expressions. More often than not, Clay has a huge smile on his face and he is extremely happy to be who he is. Maybe once a month or so, he will have a true 'melt-down' that will involve tremendous sobbing. It runs it's course and then more times than not, he is over it. Think about not being able to vent your frustrations except in this manner! We try really hard not to become frustrated with him when these moments occur. So that is a day with Clay. If anyone has questions please feel free to ask them. We are trying to find resolutions for individuals like Clay who require so much total care. Services that would provide outside interactions with his peers and solutions to address respite concerns. In August Fred and I celebrated our 28 anniversary and got away for two nights. It had been over five years since we had been alone without Clay for a night. (a few individual time outs with work or friends, but not away or even here as just Fred and Annette). Finding solutions to care beyond several hours at a time is very difficult and takes a toll upon his parents freedoms to get away and renew their couple time. Often if you see us we are indeed a threesome. Not always a hindrance...just sometimes you need to be a couple without your child; especially on who is twenty-two and requires constant care. I hope I expressed this as I want it expressed. Perhaps the better term would be as I hope it is received. I do not want our family to be pitied in any way, however empathy is always accepted. We do ask that those who read this posting will lift some extra prayer intercessions on our behalf. He is calling me from his room....guess I need to see what he needs.....;) Posted by Annette Monts Falls at 10/04/2007 03:31:00 PM

Clay's Witness - Jeremiah 29:11

"For I know the plans I have for you, "declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Written a few days before Easter Sunday, March 31, 2002 for those who requested to know some of Clay's witness...Clay was born May 19, 1985 in Boulder, Colorado. He was 36 weeks and weighed 6 pounds and 15 ounces. Mom and Clay were in extreme danger to impending uterine rupture and taken for Mom's third emergency C-section. For some reason, immediately after birth, Clay's lung ruptured. This set up a horrific chain of reactions that would take his life from him, time and time again, yet God had other plans and always sent him back to Mom and Dad and those of you who have been blessed to meet Clay on this earth's journey. Clay was the third son born to Fred and Annette in four years; firstborn May 21, 1981, a son Taylor born too prematurely, bore witness with a tiny footprint and lived a short number of hours in Tulsa Oklahoma before blossoming wings and taking flight to dance with moonbeams and stars. (God nudged us to bury him in Chapin, SC which we did, and we had no idea that we would be home to stay in summer 1986. Brandon, born March 7, 1982 by a C-section only 9.5 months after Taylor, spent his first month in the same NICU in Tulsa, then made incredible strides within three months and has never stopped growing since...now 20 and 6'3". He weighed 5lbs. 15oz. at birth. Then came Clay. Clay was transferred with much difficulty by ambulance to Denver Children's Hospital hours after he was born. It is a miracle he survived the transport teams arrival to Boulder, much more that he lived during transport. He was extremely critical and not at all expected to survive. (Transport by helicopter would have been nearly immediate, but he would not have survived the vibration of flight...however, they did fly a neonatologist to Boulder to assist in his care by ambulance. Mom first traveled to Denver on hospital pass on that Tuesday morning, May 21. It was about 36 hours after delivery and the four year anniversary of Taylor. I pleaded with Clay to live for his mama, his daddy, and his big brother Brandon. Somehow Clay clung to life by a very tiny, extremely fragile thread. At five days, Clay was scheduled for lung surgery, but before the appointed time of surgery, he died in front of his mama. I had just expressed my breast milk for him and was giving it to the nurse when this happened before my eyes. He had 7 chest tubes in his newborn body, and it took six or more nurses and doctors to rush him and all the accompanying life supports into surgery. We were told the surgeon actually opened him in the elevator making the incision across his shoulder blade even before making it i not the operating room. I was alone as Fred and Brandon had gone to Denver airport to pick up Mom Falls who had flown in from Rock Hill to help with Brandon and give us support. I can vividly remember the on my knees moment with God, not knowing if I should let Clay go be with Taylor or beg him to stay with us. I told God I would accept His decision. These were among the first Clay moments that he should never have revived; God had other plans. The medical staff told us time after time that we would be losing Clay before a certain time would pass. After 4 months in Denver, Clay was transferred back to Boulder Community Hospital. He began to nurse, even after all that time on a vent, and Fred lost his job. On the day Clay came home, Fred was in Oklahoma City, on a job interview and I brought Clay home by myself because at least it was something special to celebrate in the event the job fell through. Hours after getting him home and just as Fred was coming in from OKC, we rushed Clay back to Boulder Community. He was having seizures. Why? On the card with the meds listed, he was taking Lasix and was supposed to receive .5cc. The decimal point was nondescript and not next to the 5...Mom gave him 5cc. This high dose of Lasix caused his other medication levels to soar out of control. Another ambulance ride, full code, back to Denver. At some point, Fred and I got ahead of the ambulance in downtown Denver, morning rush hour, and no one would pull over for the ambulance we knew was carrying our child. It was moment of total desperation!!! Again, God had other plans for Clay and our family. Would you believe a pediatric neurologist told mom by phone after this incident that her baby was blind and mentally deprived? Those of you who know Clay will rejoice with us that this anguish was relatively short lived! Shortly after Clay was released from this second Denver hospitalization, Fred was offered the job in OKC. We packed up with 2 cats, Brandon and Clay with a feeding tube and oxygen, in our little Subaru wagon and headed southeast. Within 24 hours of our arrival, Clay was in a new hospital setting with new doctors and very stressed out parents. Only by God's grace did this family survive Oklahoma City those 9 months we were there. Mom was extremely depressed, and most easily could be the Andrea Yates of the past year. This is not something I enjoy sharing; yet it is the truth. I was very suicidal and yes, I did think of doing my boys in and myself. God would not allow me to hurt Fred and our families that way, and it is with gratitude and praise to Him, that I can write about all of this today. Much of that time has now become a blur, but I do remember praying so desperately that God end my suffering and Clay's suffering and allow me to find him dead in his crib. Our daily lives revolved 24 hours every day around Clay and the medical issues that came with him. After about 8 months, Fred again was jobless. The oil industry had a horrific time in the 80's as many of you may remember. Never was it an issue of Fred's work ethic or abilities; it was timing in the life of my geologist.The summer of 1986, shortly after Clay's first birthday, we came home to SC for good. Our parents paid our expenses to bring us home and get us on our feet as best they could. It was almost 5 years exactly since the date of Taylor's funeral and burial at the church I was raised in. We have attended this church since our return, and one of Clay's most profound moments of faith came at St. Thomas Lutheran. During a class with our pastor and teens ready for confirmation, the topic was 'when you cross over into Heaven, which of these pictures most matched who/what you expect to see?" Most of us picked the first picture of Jesus; the peaceful, handsome welcoming (the one that is so commonly depicted and I tend to refer to as the generic representation of Jesus). Not Clay. On a poster with about 8 different pictures, he went to the last one before agreeing to complete the assignment. Mom just figured he was not interested in the assignment...was I wrong! When this particular picture was pointed to, Clay could have burst out of the straps holding him safe in his wheelchair; he was that enthusiastic and excited! The picture? Jesus with the children gathered all around!It took a while before it all came together. Clay's faith is deeper than most of us. When he saw the picture of Jesus with the children, he remembered being there as on of those children held by Jesus. No doubt in his mind, nor in mine; Jesus held Clay many times when his spirit would briefly leave his broken body before being returned to it to live out Clay's purpose. Although it may be difficult for Clay to relay this to us in a concrete manner, it is always with Clay. Those of you who know him well, attest to me frequently that Clay radiates in a way that is so very different from other children. Jesus is such a part of Clay.This story becomes more important this Easter as we remember how Jesus died so that we could all be saved and experience total joy with Christ our Father. Almost two years ago, Clay's very special and probably closest friend, Michelle died unexpectedly. Michelle had SpinaBifida and they were classmates. They loved each other unconditionally. Michelle could understand what Clay wanted to say, and she gave him her hands when he could not make his do what they were supposed to do. When they were together, if the were not able to touch skin to skin, they at least had to have their wheelchairs touching somewhere. Each was devoted to the other. Before Michelle died, Clay had given her a butterfly ring that we found on a trip to St. Simons Island, Georgia. He and I wheeled all the shops before he finally let me know the perfect gift he had spotted. Michelle always wore her ring proudly. When she died unexpectedly of complications from a 'routine' trip to the hospital, her mother told me that she would be wearing the ring. When it came time to tell Clay about Michelle, I did not know how or when, or even what to say. I do not remember much about telling him except that when I did, Clay radiated a huge smile and his eyes lit up brightly. He was so happy for Michelle! He was not sad for himself! He knew that Michelle was free of her wheelchair and whole again, talking and playing with Jesus,and chasing butterflies in Heaven! My child, the enlightened one, knew so well how happy Michelle was. At her visitation he looked at her, without a tear and we talked about her butterfly ring on her finger. We gave her a 'goodbye' card with Clay's picture in it. Before they closed the casket the final time, they placed the card and picture in her other hand, alongside the hand with the butterfly ring. Of all the people who came to visitation and the funeral, Clay smiled the entire time. (I must admit,I felt embarrassed by this, UNTIL I realized that of all those there, Clay knew more than the rest of us) This is not to say that he has not mourned Michelle, especially when school started and her presence was desperately missed in that environment. At her funeral, we released 3 dozen yellow balloons; Michelle's favorite color. We had to cut the ribbons with scissors because that had so entangled in the wind. The special needs kids clustered up beside me. When they ascended, they rose like yellow spinning daisies in clusters tied in six. This too was an unexpected tribute...Michelle loved daisies!Clay has progressed most significantly in the months that have passed after Michelle. Often in the middle of the night he gets the uncontrolled giggles and is talking some sort of language to someone we cannot see. He tells me that Michelle visits him, they laugh, and she encourages him to do better with his hands, his speech, and everything else involving his abilities. With all the progress he has made, this last year or more, should I doubt that the connection still exists? NEVER! I know that this has been long but someone had asked me to share bits and pieces of how we have reached this leg of our destination. There is much more that I could and probably should share at some point in the future. This season of new birth seemed an appropriate time. It is never too late to be born again, Clay is a true testimony of that. Even when before he was born, we had already name him Clay. Little did we know the significance. It means: MOLDED BY THE HANDS OF GOD! How could we have known what the Potter had in store for Clay and all of us who know and love him. None of us will ever be the same.Posted by Annette Monts Falls at 10/30/2007 03:15:00 PM

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